Question of Progression?

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kitkat67
Regular Member


Date Joined Jan 2009
Total Posts : 41
   Posted 1/9/2009 9:43 AM (GMT -7)   
Hi Everyone,

I was diagnosed with Fibromyalgia going on about 3 years now. Like anything that I don't know about or want to understand better, I do research. After all my research I am finding that all literature says Fibromyalgia is not progressive. I do not know if it is my degenerative disc disease in my spine, or spinal stenosis in my cervical spine, but I feel like my pain has progressed.

Because I feel rather newly diagnosed, I would like to ask this question to those of you that have had your diagnosis for more than 10 years.

1. Do you feel that your pain or symptoms have progressed?
2. Has your fatigue increased over time?

I know we tend to have severe flare ups, but for the past year I have noticed an increase in the sensitivity to touch. My fatigue is a growing problem. I have had to forgo things I used to love to do, like going to the farmers market, or local street fairs. Just to be on my feet for more then an hour at a time wipes me out.

Thanks for your input everyone. I guess I am looking for a little relief for the future with these questions.

God Bless,
Kathy

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 1/9/2009 9:55 AM (GMT -7)   
Hi Kathy,
 
I also don't know why "they" say that Fibro isn't progressive.  Mine has gotten much much worse in the last 18 months. It's absolutely progressive!
 
My fatigue has gotten worse too.  I sleep 12 hours at night and I never had to do that before. 
 
I also have degenerative arthritis in my neck. I know that, along with my Fibro and Lupus has gotten worse. I just want to throw my hands up and say, "Uncle!"
 
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 
Moderator for the Lupus and Fibromyalgia forums


getting by
Forum Moderator


Date Joined Sep 2007
Total Posts : 40603
   Posted 1/9/2009 10:00 AM (GMT -7)   
Hi there,

My fibro has leveled off at this time. I hope that it isn't progressive, but I think as we get older, we get more aches and pains. Everybody is different, I do know that. Some of us believe this to be a progressive disorder and some of us aren't haveing that problem, at the time anyway.

Either way, we are here for you. This is a very frustrating disorder, I do know that. It seems like there is always something new coming up. I think though with your degenerative disc disease, you will have more pain and you should talk to your doctor about getting some relief.

Best wishes for a wonderful day,
Hugs, Karen
  Moderator-Depression and fibromyalgia
 
fibromyalgia, Chronic fatigue, depression,allergies


LilMissSunshine
Regular Member


Date Joined Nov 2008
Total Posts : 40
   Posted 1/9/2009 11:28 AM (GMT -7)   
well i believe i can now pinpoint the start of my fibro.... and that was about 3 years ago... it started with overall fatigue and about 6 months later came the aches.
since then the fatigue isn't as prominent as the pain is... and the sleepless nights have become more frequent... ANYTHING can throw off my sleep routine so i have to be real careful to adhere to my schedule.
i guess mine has just been a leveling off or settling in of my symptoms... are there any factors in your life that maybe disrupted your fibro in the last 18 months? you don't have to mention anything, it was just a thought.
i just read a post the other day asking if they find diet helped, some said yes and some said no.... i guess that just proves how we can be different in this!
anyways you are in my prayers! and we are always here to "feel your pain", literally.

kitkat67
Regular Member


Date Joined Jan 2009
Total Posts : 41
   Posted 1/9/2009 11:43 AM (GMT -7)   
Well, to answer your question about stressful events in my life, yes, I guess there is a lot going on right now. My Mom is losing her battle with lung cancer and I am the one she trusts to handle shopping, bills and helping her bathe and get dressed. There are 4 adult children in the area, but she seems to trust me to do these things for her. I do not want to give up my role with her. I dont know how much time she has left, and will spend every minute I can with her.

But, I always quietly figured that my depression meds would keep me from completely losing it mentally. I was hoping the physical would not prevent me from being there with my Mom. It is just when I need to take time to be good to myself is when my siblings read me the riot act. I have a tendency to disappear into my home and not communicate with anyone. So, they think I am being selfish.

Anyway, thanks for your replies. I was hoping at some point in the future that I could regain some of my energy I once had.

Kathy

JCgurl
Regular Member


Date Joined Dec 2008
Total Posts : 176
   Posted 1/9/2009 12:36 PM (GMT -7)   
Yes, Ginny, I also used to have to sleep 12-13 hours a night because of my fatigue!!!
 
Lately I have had insomnia pretty bad, but normally, when I'm not manic and having insomnia, I've been doing well and sleeping only 8 hours a night or so!!!!!
 
______________________________________________________________________
21 years old
 
Fibromyalgia, Bipolar Disorder, OCD, Irrational fears

Dagger
Veteran Member


Date Joined Apr 2008
Total Posts : 1522
   Posted 1/9/2009 11:14 PM (GMT -7)   
I would say that I have less pain and fatigue than I had 15 years ago.

jewelrylady
Veteran Member


Date Joined Jun 2008
Total Posts : 717
   Posted 1/10/2009 12:46 AM (GMT -7)   
Kathy, I think having to deal with your Mom's illness would cause alot of stress right now & could be the reason things have escalated.  Fatigue & depression are a large part of the mourning process & they both "do" cause pain.  When my Mom was sick with cancer & was getting close to the end I went into denial & wouldn't see it.  So after she died I felt guilty for along time because I just couldn't (or wouldn't)  be there.  I am glad you have this time with your Mom.  If you need shoring up, please post & let us know what you need in the way of emotional support.  You are in my prayers & I hope you feel better.  Try to chisel out some time each day to give yourself the rest you need & remember you are ill yourself.  I think you are amazing.  Take care, Denise 

 I have:  Fibromyalgia, CFS, Holt-Oram Syndrome, nasal allergies, depression, TMJ

Meds: Ibuprofen 600mg every 4-6 hours, Cyclobenzaprine 10 mg, Simvastatin 20mg, Citaloram 20mg Melatonin 5mg Sublingual, B12 sublingual, B Complex, Folic Acid, Omega 3

Married to a wonderful supportive husband & between us we have 4 children & 7 grandchildren

As apples of gold in silver carvings is a word spoken at the right time for it.    Prov. 25:11


Marlee2
Veteran Member


Date Joined Aug 2007
Total Posts : 6067
   Posted 1/10/2009 9:38 AM (GMT -7)   
Kathy, I'm so sorry to read about your mother. My fibro stayed the same for several years and then our 20 yr old grandson was killed in Iraq  over 20 months ago. The fibro has become worse every since. The pain is catching up to the fatigue but fatigue is still the worse problem for me most of the time. Right before Michael was killed I had spent over a year helping take care of a dear sweet uncle til he died. I do believe emotions and stressors has a lot to do with how fibro progresses. I'm 58 and have other factors like osteo arthritis to deal with which fibro makes worse.
 
I was hoping to regain some of my energy back with time but that hasn't happened yet. I think I need to get the treadmill out and start slow and see if that helps til the winter is over and I can get outside to walk with the puppy which should really get me going when nice weather gets here. I know exercise is so good for depression but getting myself to do it is another thing.
 
I think you have every right to take time out from taking care of your mom and doing things for yourself no matter what your siblings may think. They have no idea what it is to live in a fibro body. Maybe taking some long walks might help with all the stress and sadness you are feeling right now.
 
Take care.
 
luv and hugs
Marlee
Forum Moderator Fibromyalgia
 
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium and Osteoarthritis
 
Amitriptyline, Celexa, Xanax, Synthroid, Zyrtec, Micardis, Spironalactone, Tylenol, Reglan, Lidoderm Patches and Tramadol
 
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pattipanda
Veteran Member


Date Joined Jan 2009
Total Posts : 1014
   Posted 1/10/2009 9:49 AM (GMT -7)   
Kathy,
I'm so sorry you have so much to deal with and your mom isn't doing well.
Stress and fibro don't get along too well, I'm not a doctor, but I'm almost possitive that the stress is effecting you a lot, right now.
I know it effects me that way.
You and your mom are in my thoughts.
Take care & warm hugs,
Patti
Patti
 
Fibormyalgia, 4x Lyme Disease Survivor, Depression, Anxiety Disorder, Dyslexia, 2 Lumbar Disk Herniations, Allergies, Heart Disease, Bi-lateral Carpel Tunnel.  (Still being tested for other disorders/or whatevers).


Gamma
Regular Member


Date Joined Feb 2008
Total Posts : 233
   Posted 1/11/2009 12:52 PM (GMT -7)   

Hi Kathy,

I don't know exactly who "they" are, but I know that I don't believe doctors or medical articles that say that fibro is not progressive.  Fibro does indeed tend to get worse as we age.  I think this is due to the fact that other conditions we have also tend to progress as we get older.  Things like arthritis, osteoporosis, degenerative disc disease, etc.  I have had 52 yrs. of experience and I find that fibro tends to level off or plateau every so often, giving us a much needed break, unfortunately sooner or later it starts to get worse again.  I also have found that the longer you have to deal with fibro it is much like dealing with any other debilitating condition.  You simply learn to automatically adjust the way you do things and your life style.  That doesn't mean your life has to come to a screeching halt, I still do most of the things I have always done.  True, it is kind of hard to go hiking in a wheelchair, but then I just have to find accessable paths. yeah Life is what you make of it.  I come from the old school that didn't tolerate whining or giving up.  No matter what you had to push yourself to do what needed to be done, so it is a life long habit for me. Never, ever give up.  If you want to do something badly enough you will find a way to do it.  Don't let your fibro control your life, there are too many things out there to enjoy.


Gentle hugs,
 
Gamma
 
Fibro, Osteoporosis, OA, RA, DDD, IBS, Vertigo, Tinnitus, Carpel Tunnel, Epilepsy, TMJ,  Hypothyroidism, Familial Tremors, Spasms, Neuropathy, Trigeminal neuralgia, heel spurs
 
 


kitkat67
Regular Member


Date Joined Jan 2009
Total Posts : 41
   Posted 1/12/2009 9:15 AM (GMT -7)   
Thank You All!
I really thought I was handling everything pretty well, then I read your posts today and I am crying like a baby!! It is funny how much we tend to bury emotional feelings without even knowing it. Thanks so much for your kind words and sharing your experience of strength and hope with me. I seriously started the thread asking one question but found I had a deeper need to share what is going on with me emotionally.
AH, the trickery my mind plays on me :)

I will keep all of you posted as time goes on with my Mom. Thankfully, we have not been given a time frame. I hate it when doctors put a limit on someones longevity. So, it is really day to day, and many prayers for less pain. I think I am prepared for her death, but again I guess we never know until it happens. I just keep telling myself that she will be going to a wonderful place, with no more pain, and she can then watch over us as we raise our own families.
Again, thank you all. It is truly appreciated...and needed.
Kathy

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 1/12/2009 1:41 PM (GMT -7)   
Kathy, as you have seen, stress plays a huge part in how we feel and how much pain we are in.  I don't understand it, but it is true.
 
Now, doctors and time frames.....My grandmother had exploratory surgery and had a huge tumor and cancer of the lymphatic system...one of the worst types of cancer.  They didn't remove the cancerous tumor because it would have killed her right then so they stitched her up and gave her six months to live.  She did take chemo.  Her tumor shrunk to the size of a golf ball and the cancer went into remission.  She died 15 years later of Alzheimer's!  So, the only one that knows the real time frame is God.
 
You and your Mom are in my prayers.
 
Sherrine
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


Wookie Luvvah
New Member


Date Joined Jan 2009
Total Posts : 10
   Posted 1/13/2009 10:53 PM (GMT -7)   
My pain has had it's share of ebbs and flows over the years. What I've always found most helpful is trying to push through the pain to be active in someway. The more active I was, the more I would break out the the catch 22 that would make me want to hold back from being active. When I've had trouble, I've worked with PT folks to get going.

However, I am in the worse pain of my life these past couple of years. I too have read that that it's not supposed to get progressive - so maybe it's that you just get tired of fighting back to just have some semblance of a normal life. Whatever it is, I've decided that I'm no doc so I'm going to go the rounds again to make sure there is nothing new going on. How cool would it be if they found something that could be fixed.

Anyways - if you are having issues it never hurts to do the following:
- double check with your doc on any change in symptoms
- find a way to exercise more (I know, I know - but seriously)
- get more rest and eat healthier

Good luck finding your balance and working through your ebbs and flows.

julieleaps
Regular Member


Date Joined Oct 2008
Total Posts : 257
   Posted 1/13/2009 11:38 PM (GMT -7)   
Kathy,

Thank you for posting this question. I have wondered about this. I was only diagnosed in April and since the change of seasons this fall, I've been in an awful flare. Just can't snap out of it. I'm 46 and I feel 86. Will have to wait to see if it progresses over time.

-Julie
Still learning how to manage my Fibromylagia, and all the lovely gifts it brings.   
I had severe spinal stenosis, had fusion done on C5-7, and my life has changed. 
 
 


AustenFan
Veteran Member


Date Joined Aug 2008
Total Posts : 1771
   Posted 1/14/2009 6:50 AM (GMT -7)   
Kathy,
 
I'm so sorry that you and your mom are going through such a difficult time.  I really do believe that fibro worsens exponentially when you are dealing with really stressful situations.
 
As for progression, either mine has progressed or I'm just going through a rough couple of years with it.  I feel worse now than I did a few years ago, both with pain and fatigue.  It's hard to say, but I guess time will tell. 
 
Hang in there; there are lots of people here who care.  :-)
 
Hugs - Austen
"There is no charm equal to tenderness of  heart." - Jane Austen
 
 
Fibromyalgia, 2 back surgeries, Meniere's Disease, 30+ kidney stones, GERD, IBS, Asthma, Allergies, Endometriosis, Heart Arrythmia, Myofascial Pain, TMJ.
 
 
 
 
 
 


kitkat67
Regular Member


Date Joined Jan 2009
Total Posts : 41
   Posted 1/14/2009 8:37 AM (GMT -7)   
Thanks to you all,
Thank you again for your advice and understanding. Along the same subject, it has to do with exercise. I will admit I have been pretty sedentary of late. But just yesterday, I stood in one spot and crushed cans with a hand held crusher mounted to the fence outside. By calfs now hurt very bad and I am limping because of how sore I am. I was not doing deep knee bends, just standing in one spot? How do we know when this pain is from exercise or from Fibromyalgia.

I do my stretches each morning, and am considering starting to go walking. Now, because I am so sore I am having second thoughts. How do I know when it is just muscle soreness and when it could be Fibromyalgia. I know I am rambling here.

I am just frustrated, I am definetly in more pain today then I was 2 years ago.

Thanks,
Kathy
Kathy

http://www.myspace.com/mlmteacher
Fibromyalgia,bi-polar,DDD and osteoarthritis.

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